Chronic Style

A blog about living stylishly with a few chronic illnesses.

Image by Maria Fabrizio via NPR

Image by Maria Fabrizio via NPR

A coordinator from UCSF let me know about this piece on National Public Radio (NPR) that talks a bit about the study I’ve been involved with for years. As with even the most healthy of pregnancies, there is always a level of uncertainty and anxiety that comes with the territory. It’s very refreshing to see that this is becoming a bigger part of the discussion when it comes to the complications of staying healthy when pregnant while still on medication.

As someone who was in remission and able to give birth to an incredibly healthy and thriving boy (while staying on my medicine), I couldn’t be prouder of the work Dr. Uma Mahadevan is doing. Listen to (or read) the full piece here: When Pregnant Women Need Medicine, They Encounter a Void.

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I’ve been reminded recently — for several reasons and by many folks — of the unfamiliarity of extraintestinal manifestations (EIM or EIMs) in Crohn’s disease. Since I’m becoming a patient-expert on EIMs (through personal experience), I thought I’d share a bit more about what I know now.

whacamole_cat

Whac-a-mole cat (via Reddit)

EIMs occur in at least 25% of all patients dealing with Crohn’s and have been the primary focus of my care for going on 5 years now. My intestinal issues (knock on wood) have been mostly in remission. My EIMs though have been what my brother and husband call a game of whac-a-mole — just as one issue subsides (my knees), a new one seems to pop-up (my neck).

What’s been most helpful throughout the progression of this particular part of my disease course? Communication between my rheumatologist, my gastroenterologist, my dermatologist, my trainer, my perinatologist (when appropriate), my acupuncturist, and of course, me! Particularly with my knee-related inflammatory arthritis, I’ve found that low-impact exercise (biking, swimming, surfing, elliptical, and TRX), high-rep with low-weight exercises, and stretching are key for me.

Some more great resources on Crohn’s related EIMs here:

+ Extraintestinal Manifestations of Inflammatory Bowel Disease via the NIH
+ Extraintestinal Manifestations of Inflammatory Bowel Disease: Focus on the Musculoskeletal, Dermatologic, and Ocular Manifestations via Medscape
+ Arthritis complications via the CCFA

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It ironically took a colonoscopy for me to find some time to stop what I was doing and write — so hello from the Saturday after my Friday colonoscopy. I am 5 pounds lighter and a bit slow today, but feeling a-okay about the world since I am not drinking a 32oz Big Gulp of MoviPrep (bleh!) or wearing hospital socks. I’ve actually found the time to pay bills, write a few thank you’s and watch several episodes of The Good Wife while my husband takes good care of me and our sweet, crazy toddler.

With all of that in mind, I thought I’d share an awesome collection of TED videos about the importance of slowing down, something I do not often do. One of my favorites — if you cannot slow down long enough to watch many of them — is by Paolo Cardini who makes a strong case for “monotasking.” It’s fantastic.

Bon week-end!

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